Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Wednesday, 27 June 2012

A learning curve day

Today has been a really rubbish day, both healthwise and emotionally, but with a few nice moments too.

Last night, things suddenly got very painful, and overnight the pain just got worse and worse to the point where I got virtually no sleep. By this morning I was worried, and in fairly severe pain, as well as exhausted beyond words. So, I know the drill; I'm supposed to ring the hospital and ask their advice. Could I do it? No. So I procrastinated and procrastinated, and worked myself up into a real emotional mess, and tried to self-diagnose and sort it out myself. The pain was so bad I couldn't tell which area it was coming from, it sort of starts in the right elbow, agony up to the shoulder, back and front of neck, and across both boobs. So bad it felt like my bones were hurting too. So I started by pulling off the dressings. Imagine clingfilm with superglue, across very bruised, wounded areas, with a load of blood-stained guaze that had stuck solid to the bits that hurt the most. I know enough about hospitals to know that I really didn't want to submit to anyone else ripping them off, thank you very much, but it was an act of bravery heavily tempered with stupidity to do it myself. And yes, it flipping well hurt loads too.

It was a bit a of shock seeing my now naked boobs in the mirror - they are so swollen that if I started a porn career today I'd give Jordan a run for her money, and I'd probably make a fair bit for myself too. They are, quick frankly, enormous, but the photographer would have to use very arty lighting and shoot in sophisticated black and white to disguise the rather fetching rainbow spectrum of bruising - colourful browns, purples, yellow and greens.

However, I couldn't really see what was causing all this pain. All I learnt was that the really scary, stuck solid dressing, the one I couldn't get off by myself, was probably responsible. Then I got all frightened because, if there was an infection brewing there, would I become very seriously ill quite quickly without the lymph nodes they've removed that normally act as the line of defence? I now definitely couldn't phone the hospital, because I was so confused I wouldn't have made any sense, so I rang my friend Ann instead.

She was fabulous. Even when I just burst into tears on the end of the phone. Ann calmed me down and talked me through the probable reasons for my reluctance to call for help, which have been a bit of a revelation, but also quite difficult to absorb because this readjustment of my attitudes now I'm ill is going to be very painful.

Her first question " don't you think it would be better to leave all this to the medics?" hit me in a spot of total vulnerability. For the last 18 years I've been the mother of the only child in the world with his particular life-threatening medical condition, a very lonely, scary situation to be in. I have had far more experience than most of the highs and the lows of the NHS, and I have very mixed emotions about medical professionals. This really isn't the most helpful mindset to have when facing long and difficult cancer treatments, but I somehow have to examine these issues of trust.

Then Ann says "You've always been so strong, I think it's really hard for you to ask for help". Such an insightful lady. In T's early day, things were incredibly hard. I had three children under 5, and T spent over half of his first six years in hospital, seriously ill. We had over 38 hospital admissions, mostly lasting for months, and during each admission there were several times when it looked like we wouldn't be bringing him home. Even when we were home, I could never take my eye of the ball because he could just stop breathing without any notice whatsoever. I had a husband who developed mental health issues under the strain, and also escaped by over-using alcohol, becoming verbally agressive and confrontational as a result. I also had three very vulnerable tiny children. We didn't know it then, but the other two would also each go on to acquire impressively long lists of disabilities, but I did know that going under myself was simply never going to be an option. They needed me then, and they still need me now. In the intervening years I have had to stay strong and invincible, I simply can never remember ever creeping back to bed because I felt lousy, and yes, there have been plenty of times I've had nights on end with no sleep, been quite seriously ill, and felt totally pants, but I've just learnt to carry on regardless, because there has never been any other way. I've always been aware that if I ever fell apart, the children's world would just collapse. It's this frightening thought that is now threatening to sabotage my whole recovery process.

So, I really have some tough challenges ahead. I need to learn to step back, let go of the reins, and step out of the driving seat. All these things just seem shockingly frightening to do right now, as if the fall-out of me not holding it all together will precipitate a terrible calamity on all those I love so dearly. I'm really not sure I can do it.

So I eventually did ring the hospital, and a very kind doctor suggested I go in so he can see what's happening. More emotional turmoil - how do I get there - I'm not well enough to drive, in fact I haven't even got dressed for over a week. What will they do when I get there? Will it hurt? I need someone with me. But who? WM had a very busy day with meetings and a huge backlog of work mostly caused by everything I've already put him through this week, but of course, as always, he came up trumps, dropped everything, and turned up so we could go together.

The lovely young doctor was waiting for me, and had a good look, and he thinks I've got a build up of fluid inside the wound, and with a lot of rest and painkillers, it should reabsorb into the body over the next few days. Another wake-up call - I know I have really struggled with this whole rest and recuperation stuff, so I think this latest episode is nature's own way of making me face up to taking things very easily, and accepting loads of time off. So it's nothing serious, just very painful, and I came home and went virtually straight to bed where I slept like a baby for a good couple of hours, a first for me.

Although it's been hard, some lovely things that have also happened today - Ann, you're amazing, thank you. WM, you are fabulous, thank you. The kind young doctor was so lovely that maybe there might be a bit a light of the end of my trusting-the-NHS-all-over-again tunnel. I've managed lots of things I'm not very good at today - asking for help, going back to bed during the day and sleeping, and starting to accept that I have a load of emotional barriers that need to come down if I'm to truly get better.

Another lovely thing - some of you actually left comments of yesterday's blog, so thank you for all your very kind and supportive words, and it's good to know that it actually works at last! I spent a brain-aching while last night locating and re-setting settings, and it really is a good feeling when you take on technology and win. Tomorrow I'll start working on locating and re-setting my own settings, and set about taking on this cancer stuff til I win that one too.

If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:

4 comments:

Hooray for Ann and WM!Never worry about any of the kids, you know they'll be looked after whilst you recover and there's plenty of us who won't go letting their world collapse and have been quietly observing from the passenger seat.Now, do as the doctor ordered and rest!xx

My goodness Yvonne, I think you have earned more than enough brownie points over the years, in being strong and just getting on with it. Now is the time to cash them all in. Just look at it like that if you can. You have to rest and work with the people who know best now, in order to get well and strong.You must listen to your body and ME!!!I know you have bad memories from dealing with the medical profession but this is a new chapter and your right, you do have to trust them now. As my kids would say...Take a chill pill and relax. Tall order,I know, but i have every faith you can do it.I hope today is a good one.And.. PLEASE, PLEASE PLEASE. ring me if you need a lift anywhere. If i am tied up and can't do it I will say so, but as I don't work, I am here most of the time. Its just a question Yvonne. Thats all, so ask.love you lotsLinda xx

I didn't read yesterday's entry til I got home from work today, I hope today has proved a better day for you...and to echo Linda if you need a lift in a situation like that - RING!!! Even if I had been at work, some things are more important and you are one of them! Please listen to the nice doctor and your friends and loved ones and REST WOMAN! You need to realise that there is only one expert in the world in T's condition and that's you, however,breast cancer is different and I hope on the whole the doctors are on safer ground and know what they're talking about..they are there to help you, so try and let them.Here's hoping you have rested today, Lots of Love xxxxx

You really are amazing. I know how strong you are and what you've achieved and for how long you've kept it up. The rest of us can only stand back and admire your determination. I understand that you need to be in control but I think the way to control your current situation is to talk to the doctors, listen to them and then make them listen to you. I think these doctors will listen to you but if they don't, that's the time to ignore them / tell them where to go. I know you will be able to find the strength to do it and WM will be by you backing you up so please let the hospital people help you (so long as they only do it on your own terms). Lots of love

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.